Ugh! Today was all kinds of awful. Skyler is starting to have drug with drawls that have made him so sick. He has been doing so well lately that they started weening him down on the sedation and pain medicine, but it has all of a sudden hit him hard. He has been so agitated and just clawing all over his face because he is so itchy. He has lots of diarrhea and also threw up tons. Thank goodness he didn't aspirate any of it though. I have never seen him in so much pain.
Also today every time they suction him his O2 would drop low. On one of his spontaneous breathing treatments today (where he breathes on his own) he started panicking and his oxygen dropped into the low 70's. The nurse even had to bag him to get his oxygen up, which has never happened before. They did a chest x-ray to see if part of his lung collapsed but it didn't show anything new so we are kinda at a loss as to whats going on. So they upped his vent settings again and we will see what happens.
At one point today Sky was so agitated we decided to turn him on the other side and see if that helped and we found that he was laying in a pool of blood. For some odd reason the skin on his neck tore and he started bleeding like crazy from it! At first it looked like it was coming from his mouth so to say I freaked out is an understatement. His platelets were low at the time so that made it bleed even more. The nurse had to hold direct pressure on it for like twenty minutes to get it to stop bleeding.
Right now they have to change the tape that's holding his breathing tube in because it got throw up and blood on it, but since he has been so agitated and kinda pulling at the tube today they are going to paralyze him for it. To me I think that's complete torture. I hate it!! For all we know he could be laying there aware of whats going on and he cant move his body. That must be awful and I cant stand it! I'm writing this outside of his room right now because I just cant sit by and watch that happen to him. I just want to hold him tight and tell him everything is going to be ok. I cant do that though and honestly I dont know if everything is going to be ok.
So today was pretty awful and I'm not sure what to make of it. Is he getting worse again? Is this just a tiny setback? I just wish someone could tell me exactly whats going to happen. I swear there is no worse torture than to watch your child suffer and know that there is nothing you can do to make it better.